How to be as well as possible after a diagnosis of MS
Everyone needs to look after their general health, both body and mind, but this can be more important when you have been diagnosed with a long-term condition like multiple sclerosis. This information explores how changes in lifestyle can help you live well with MS.
How looking after body and mind can make a difference.
For some people just diagnosed with MS, life will carry on exactly as before. Others may find that the symptoms of MS have an impact on the usual pattern of their life, for example, fatigue or mobility issues can mean that it's important to pace yourself more carefully. Consequently, some people will want, or need, to make changes.
Being diagnosed with a long-term condition can be the prompt to look at all those aspects of life that everyone is encouraged to manage well: diet, exercise, weight, stress, smoking and work-life balance. Being as well as possible can make it easier to deal with any symptoms or relapses that come along.
Any changes don't have to be made instantly and it's best to be realistic about what fits into your lifestyle. Living well with MS still means doing things that you enjoy like having a treat and a good time with family and friends.
The bottom line is that it's your life and your MS. It will be up to you how you manage it with the support of health professionals, family, friends and others. It's not possible for anyone to say exactly what you should do but we can offer some suggestions.
Making a start
Getting your head around being diagnosed with MS can take a while.
It may seem unreal or like it's happening to someone else. You may need time to adjust. Also, you may have appointments to attend as well as people you need to tell about your diagnosis. This may take priority to begin with.
However, you might like to begin thinking about how you live your life.
- Do you smoke?
- How well balanced is your diet?
- Do you drink too much alcohol or take recreational drugs?
- Do you exercise enough or has MS affected what exercise you can do?
- Are any symptoms causing difficulties?
- Are you feeling stressed about your diagnosis?
- Are there things that are stressing you apart from your MS?
- What do you enjoy doing?
- What are the positive things in your life?
- Is your work-life balance where you'd like it to be?
If you'd like to explore making changes, you could think:
- What would you like to happen?
- How could this be achieved?
- Where could you most easily make a start?
- Is there something urgent or important that needs doing first?
- Who could support or advise you?
Find out more:
Living with MS day to day
When it comes to lifestyle, the advice for people with MS is the same as for everyone – eat healthily, exercise sensibly, avoid smoking and try not to drink too much alcohol. Also, listen to people who know about MS. You may encounter a wide range of opinion but use your judgement and choose wisely.
Smoking has been linked to an increased risk of getting MS but also to faster progression of the disease. Smoking is a risk factor for a range of other conditions including lung cancer and other autoimmune conditions. If you smoke, could you give up or, at least, cut down? There are a range of support programmes so you could visit your GP to discuss what could work for you.
Find out more:
- NHS Choices has tips on how to stop smoking
There has been a wide range of views on what might be a good diet for people with MS. Diet is a difficult area to research so high quality evidence is in short supply.
Overall, government advice on what makes a good balanced diet is relevant to people with MS as well as the general population. If you are interested in trying alternative diets, it will be important to consider the cost, the time needed to prepare meals, whether it could affect your ability to socialise or eat with the family and whether the diet is nutritionally balanced.
Find out more:
- Diet (A-Z)
Exercise and fatigue
It is important for good health to take regular exercise. Many people with MS experience fatigue (a type of exhaustion which is out of proportion to the task undertaken) and managing this will need to be balanced with taking suitable exercise. Exercise doesn't always have to be energetic and our website shows exercises that can be done sitting down or on the floor.
The most important thing is to do something that you enjoy and that will keep the strength in your muscles and build endurance. The StayingActive section of our website has suggestions from angling to yoga.
Fatigue in MS can include mental fatigue as well as physical fatigue so it's important to take breaks from mentally tiring activities like reading or using a computer. MS can cause difficulties concentrating or remembering things. These symptoms are known as cognitive difficulties.
If fatigue is an issue, then it is important to learn to pace yourself and to give priority to the most urgent or important tasks.
Find out more:
- Cognition (A-Z)
- Living with fatigue (book)
- Describing fatigue to others (blog)
- Move it for MS (exercise video with Mr Motivator)
- Exercises for people with MS
Feeling down or depressed
Depression is a common symptom in MS and can be the direct result of an MS lesion in part of the brain which controls mood. It can also be a consequence of dealing with major life events including being diagnosed with MS. It is natural to feel really down sometimes but, if it carries on for more than a few weeks, you should seek advice.
Friends and family may be very supportive and willing to talk it through. However, you might like to speak to someone who is not so close to your situation, like a counsellor or neuropsychologist, where you may feel able to speak more freely.
Find out more:
Stress and relaxation
You may feel stressed about your diagnosis or because some of your symptoms are troublesome. You may have other things in your life which are stressful.
It can help to take a practical approach and think about:
- What is causing your stress and can anything be done? If it's in your power, could you make some changes that would decrease your stress?
- How much of your feelings of stress come from getting worked up about something? If you could take a calmer approach would you feel less stressed?
- How do you prefer to relax? Is it listening to music, going for a walk, doing meditation or mindfulness?
- Could you make more time for relaxation or learn a new technique that might help?
It is good to listen to your body and give yourself permission to rest or relax without feeling guilty.
You may find it helpful to be open about your diagnosis and how you are feeling, at least with those closest to you. This can be less stressful than keeping quiet and allow you to support each other. We have information you can give to people, including children, that may help them understand your MS.
Find out more:
Some people newly diagnosed with MS will have few, if any, symptoms but some people will be learning to manage symptoms, some of which may have a significant impact on daily life. Many people will experience relapses but not everyone as, in general, people with progressive forms of MS do not have relapses.
Managing symptoms and relapses is probably a whole new experience and it may take time to work out what is best for you. You will be able to explore treatment options with your MS team and, if one medication or approach is not working well, you could ask about alternatives.
Heat and, for some people, cold can make symptoms worse so having layers of clothing and a fan, icepack or water spray can be really helpful.
It can be tempting to try an experimental or controversial treatment but consider the strength of the evidence that it works as well as the risks of harm, significant side effects and high costs. Try not to be pressured into something by well-meaning friends or family. If in doubt, have a chat with your MS team.
If you have new symptoms, or your symptoms become worse, then it is a good idea to contact your MS nurse, or other health professionals, for advice. Don't feel that you have to put up with everything without support. Also, not all symptoms may be due to MS so it's good to have them checked out and to go for all the usual health checks and vaccinations that you are offered.
Living with MS in the longer term
After diagnosis, it may feel like life has changed in a big way or it may seem exactly the same but with the "MS" tag added.
It is good to stay positive even though this may seem like a tall order sometimes. Each person can develop their own way of staying positive by focusing on what's important to them and by learning new ways of dealing with the ups and downs that MS may bring.
You can become the expert on your own MS and take control of how you manage it. You will have support from health professionals, friends and family but it can be good to feel in the driving seat and to remain true to yourself.
Many people with MS are diagnosed at a time in their lives when they are making key life choices like whether to settle down, have children and build a career. Being diagnosed with MS may not change your plans so don't feel pressured into making decisions too soon after diagnosis.
Find out more:
- Sources of information and support
- MS and your feelings
- MS and life choices
- MS and me – a self-management guide to living with MS (book)
There may be times when you need some practical support. Asking for help can be hard at first especially if you are used to being very independent. However, a little help can go a long way particularly if you are having a relapse or a bad patch of symptoms.
Perhaps the family could lend a hand more around the house, you might employ a cleaner once a week or get the heavy grocery shopping delivered. Would colleagues at work take on a few things that you now find difficult or let you sit near the window if heat makes your symptoms worse?
Often people don't realise what impact symptoms can have, especially symptoms that seem invisible to others. Consequently, it is worth asking people for help rather than waiting for them to offer. Make your request very specific, clear and reasonable and they are more likely to understand what you need and then say yes. For example, you could say 'Are you able to look after the children for three hours on Saturday afternoon?' rather than 'Could you look after the children sometimes?'
Find out more:
MS is a very active area of research and treatments for MS are improving all the time.
You will have choices and can take personal responsibility for how you manage your MS such as keeping up physiotherapy exercises or taking medication as prescribed.
Although professional help is important, self help is equally important. Adopting a healthy lifestyle can be part of managing your MS well. Also, you can learn from others who are willing to share their experiences and tips for living with MS.
Take control. You don't have to be a superhero who deals with everything perfectly or a victim of MS. You are a person who just happens to have MS. Many people with MS say "I have MS but MS doesn't have me". This can be a good mantra to live by.
Find out more:
More about Making Sense of MS
Making Sense of MS is our suite of resources for people who have recently been diagnosed with MS
Order this information sheet in print for free or read it as a PDF
View all our newly diagnosed resources and order them in print for free or read them as PDFs
Visit the home page for people newly diagnosed with MS to browse information online
Browse our video collection which features people with MS talking about their diagnosis and also MS specialist health professionals
This page will be reviewed within three years